It’s Time for New York to Pass Autism Insurance Reform

This is a guest post by Lorri Unumb, Autism Speaks senior policy advisor and counsel. Lorri also teaches “Autism and the Law” at the George Washington University Law School.

In the past three years, 20 states have passed laws requiring health insurance policies to cover individuals with autism and the treatments prescribed by doctors for autism. The New York legislature is on the verge of passing one of the broadest autism insurance reform bills in the nation, and yet some members of the autism community oppose the bill, largely because of its broadness. I write to offer some historical and legal perspective on a bill that embraces a broad approach to legislating.

I have been following New York’s autism legislation with great interest, not only because of my job as policy advisor with Autism Speaks but also because my son with severe autism has health insurance that is governed by New York law. I have a vested personal and professional interest in the legislation.

Further, I have a somewhat unique historical perspective, given my role in helping to spur the national movement toward autism insurance reform. In 2005, while I was a law professor, I wrote legislation in South Carolina to require health insurance coverage for autism. The bill broadly required that:

A health insurance plan as defined in this section must provide coverage for the treatment of autism spectrum disorder. Coverage provided under this section is limited to treatment that is prescribed by the insured’s treating medical doctor in accordance with a treatment plan.

The bill did not list the particular treatments that insurance must cover; rather, it required insurers to cover whatever the doctor prescribes, within reason. It contained language that protected the insurers from having to pay for treatments that were unnecessary, not evidence-based, provided by family members, and the like:

[T]he coverage required . . . may be subject to other general exclusions and limitations of the health insurance plan, including, but not limited to, coordination of benefits, participating provider requirements, restrictions on services provided by family or household members, utilization review of health care services including review of medical necessity, case management, and other managed care provisions.

This legislation passed in South Carolina in 2007, and since that time, children with autism have been receiving meaningful coverage for mainstream treatments prescribed by their doctors, including psychological care, speech therapy, occupational therapy, physical therapy, and the most commonly-prescribed treatment for autism, applied behavior analysis (ABA) therapy.

The South Carolina law is very similar to Indiana’s autism insurance statute, and individuals with autism in Indiana have likewise been receiving coverage under that state’s broadly written bill.

Since 2007, a number of states have passed autism insurance bills that do not embrace the broad approach; instead, they laundry-list the treatments that must be covered. A typical list from these states includes psychological care, psychiatric care, therapeutic care (OT, PT, ST), pharmacological care, and behavioral therapy (ABA). Also, most bills that have passed since 2007 contain significant limitations of coverage, such as a cap that limits spending on ABA therapy to $50,000 per year or an age cap that requires coverage only through age 21.

In 2009, there were pending in the New York legislature four different autism insurance bills, three of which contained a laundry-list of treatments to be covered. The lists varied considerably, and members of the autism community could not agree on how expansive the list should be. The bills also contained various age and dollar caps on coverage.

In October 2009, the Senate Insurance Committee conducted a hearing on all of the pending autism bills. The all-day hearing included testimony from dozens of witnesses and was extremely comprehensive.

After hearing testimony on the competing bills, the committee chair decided to craft his own bill, which returned to the broad approach of merely legislating coverage and leaving for another body (a regulatory body) the exact specifics of the coverage.

As a parent and a lawyer, I support this approach.

By necessity, legislators are generalists and should not be called upon to list the treatment options from which doctors may choose, or to weigh the evidence supporting one medical treatment against the evidence supporting another. It’s not their job. In the context of insurance legislation, their job is to broadly require coverage if they find coverage lacking and within the public interest.

Critics of this bill don’t like the broad approach. They want the certainty of a legislative laundry-list, as has been provided in numerous other states. However, critics fail to acknowledge that the New York autism community itself could not agree on the list and such disagreement is what led to the broad bill in the first place. I have worked with the autism community in almost all of the states that produced laundry-list-type bills and statutes, and never was there dissension within the community that would have required the legislature to choose among various lists.

Critics lodge several other complaints, too.

First, critics don’t like that the bill limits the insurers’ responsibility to covering treatments that are “evidence-based, peer-reviewed and clinically proven.” Critics say this tripartite standard creates an impossibly high threshold that no treatments will meet.

It is not uncommon for states to limit insurers’ responsibility to covering treatments that are “evidence-based,” which I believe is an appropriate limitation. Generally, premium-payers expect insurers to cover mainstream treatments but do not expect insurers to cover treatments that have not been empirically validated.

The issue in the New York bill is the addition of the terms “peer-reviewed” and “clinically proven.” The addition of these terms does not create a higher standard. To be “evidence-based,” a treatment must have been studied and those studies must be have been published in peer-reviewed journals. Thus, “evidence-based” subsumes “peer-reviewed.”

Similarly, “clinically proven” simply reinforces the concept of “evidence-based” treatment but does not set a higher standard of review.

Critics of the bill have yet to name a single autism treatment that would satisfy the traditional standard of “evidence-based” but would not satisfy the tripartite standard.

It seems that what the bill’s opponents really want is coverage for treatments that are not evidence-based. Certainly, there are many protocols that parents of children with autism try on their children that are lacking sufficient evidence of efficacy. I have used some of them with my own son, and I don’t question the intentions of other parents who do so. But I understand that insurers must draw the line somewhere, and “evidence-based” is where the line is traditionally drawn in health insurance.

The overall success of the autism insurance reform movement over the last three years stems largely from the fact that the autism community has not sought special treatment in insurance matters; we have sought equal treatment. All we have asked is that the mainstream treatments that our doctors prescribe for our medical condition be covered by insurance. To have continued success, we must be willing to limit the treatments for which we seek coverage to those that are evidence-based.

Opponents of the autism bill also criticize “the establishment of a four agency committee . . . to pick out whatever ‘science’ they believe in.” Actually, the bill does not establish a four-agency committee. It simply directs the Commissioner of Health to promulgate regulations (a standard practice following new legislation) and directs the Commissioner to consult with three other relevant agencies in the process. In a field where families and services often suffer because one agency never knows what another agency is doing, it is refreshing to see a collaborative process established from the outset.

Further, I am puzzled by the fear of having the Department of Health determine what treatments must be covered. The opponents wish to have a legislative body (generalists) determine a list of treatments that must be covered, but they fear a regulatory body (health specialists) doing the same?

Finally, opponents of the bill apparently fear losing coverage that currently exists under their health insurance policies or failing to obtain coverage for services like anesthesiological and endocrinological care. S.7000B/A.10372A specifies that it “shall not be construed as limiting the benefits that are otherwise available to an individual under the policy.” As such, if anesthesia is generally covered under a policy, it will still be covered without regard to the list of treatments that the Commissioner of Health develops.

Proponents of S.7000B/A.10372A, who are also parents of children with autism, do not wish to limit the treatments that any family affected by autism wishes to use with their children. Nor do we wish to narrowly restrict what doctors may prescribe for their patients. Rather, we wish to support a bill that is likely to pass – a bill with reasonable limitations that are fair to all parties. Proponents see advantages to broadly-written bills like S.7000B/A.10372A, even for those wishing to include treatments outside the mainstream. For instance, if new treatments emerge, or existing treatments go through the rigors of becoming evidence-based, these can be added through the regulatory process to the list of treatments that must be covered without the need for going back to the legislature to amend the law.

The New York autism bill is good policy. It covers individuals with autism of all ages. It does not impose artificial dollar caps on treatments, as many other states’ autism laws do. It asks the legislative and regulatory systems to operate together, as they were designed to do. And it will offer much-needed relief to individuals with autism and their families, as citizens in 21 other states are now receiving.

Does anyone know whether this bill would expand the definition of permitted provider to include SEITS? Even if my health insurer is told that it must pay for ABA therapy for my autistic son, they will say the ABA therapy will only be covered if it is provided by a permitted provider (doctor, psychologist, social worker i.e., the people who generally do not provide ABA therapy as part of their practice). The result is that, as a practical matter, families will not be able to find a Permitted Provider and therefore, not be able to make a claim for reimbursement for ABA therapy. Please let me know how this is addressed.

i love this topic – you have done a great job bringing this to the forefront. I teach a class about autism and basic sensory needs, and am now reminded that I need to offer it the the public to assist in these things

Amen Lori- I feel your pain. Thanks for an informative article that points out some of the issues surrounding the inability to get meaningfull autism insurance reform accomplished. Unfortunately your
dodging the bigger issue that Autism Speaks continues to dodge around out of the fear of ofending significant segments of their support. A win/win means finding a common agenda in which a consensus opinion
has been reached and then moving forward to accomplish that agenda. AS continues to court the louder more energized segment of the advocacy in order to extract resources even when that segments aims defeat the
agenda. I am largely dismayed at the counter productive, selfish, aims of these folks. If you want to feed your kid diocyl doorknob because the “Anihilate Autism Now Witchdoctor” says it wil make your kid president of the usa -go for it.
But please stop blocking progess toward getting the rest of our children the help they need. The common agenda is helping people with autism. There is no room for manipulated masses who so easily get it when somebody tells them big pharma
and the chemical industry caused autism but cannot figure out that they are being manipulated by some green, organic, snake oil salesman who sees the truth ruining his “practice”.

Moreover- AS needs to stop the “niche” marketing strategy- it adds to the divisiveness. Stop supporting the ideals of politicos who “at the eleventh hour” remove meaningfull reform for autism insurance from a “historical” health care reform bill.
Stop nibling around the corners of the plate and throw the heater down the middle- 56% of workers get their health care from ERISa plans-plans that pay nothing for Services for Autism. They own the market. Stop thinking like a lawyer and a marketer and start thinking like an economist. Juke left and Juke right?
An effective punt returner knows its north and south.

So how do we keep school districts from trying to push their educational responsability to the insurance companies for ABA? Some people are getting very good services (quantity and quality) from school districts, and we have a seat at the table in making decisions (CSE). My experience with medical insurance has been very different, with caps on what therapists/aids are paid per hour, etc. ABA/occupational/physical therapies straddle both educational and medical worlds and I see this law as a way for schools to cut and run. Also, with regard to evidence based studies, we are not talking about a pill or injection. So big pharma may not be interested. These studies are expensive and take years to complete. That standard needs more detail. People with terminal cancers still are given chemotherapy which is covered by insurance, despite low single digit survival rates for cancers like pancreatic. Many policies cover abortion, what exactly is the evidence based data there? The evidence should be that some portion, even a small portion of the Autism population benefited, and the benefit was recorded by a medical professional. The scientific community is now starting to look at Autism as “autisms”, sort of like cancer. There may be many types, and many causes. Perhaps in the Bill, the state should fund the evidence based studies they demand when there are petitions of some minimum number, otherwise the result of this bill, is just a nother bill for services for us desperate parents.

Excellent post Lorri. You need to come back and help Vermont in understanding that it is not just an early intervention bill. All ages will be helped and supported. It’s the fair bill. Thank you for your post. It’s being sent far and wide! ~ ANNE

Wow-excellent posts! I take it back- there are more than the manipulated masses out there! Neil-let me add my favoite to your list of “evidence based” -my companies Erisa plan pays for Viagra. What a world-nothing for autism- but if you cant….. Talk about misappropriated priorities.

*Help needed!!! I am undergoing a masters degree in Interactive Media at the University of London, London College of Communications. My dissertation topic is within the field of Autism & Computing.

I have an online questionnaire that needs to be completed as a part of my research. I would be most grateful if you could forward this email or the link below to anyone you know who is a parent, guardian, or caregiver of a child or adolescent/young adult with autism. The responses will help understand the current behaviors and methods used for learning and interacting among these individuals.

This questionnaire should take no more than 10-12 minutes to complete. Feel free to contact me if you have any questions.

So can anyone explain to me why medical insurance should pay for therapies for autism but not for all of the other equally tragic developmental disabilities? What am I missing here? How is it fair and constitutional to tell all the individuals whose children have chromosomal disorders, brain damage, mental retardation. etc. to just “make do” with whatever’s offered by their school district and county board of MR/DD, while using health insurance dollars to offer speech and occupational therapy, in-home ABA tutors (and probably horsey rides and swim sessions too, when ‘ordered’ by a doctor)? Don’t get me wrong…autism is a devastating disability (I know, I have two children on the spectrum), and I absolutely know first-hand how underfunded services are. But it is a DEVELOPMENTAL disability and as such, these services fall under the domain of special education and DD boards, not medical insurance. For all of you fighting for this sweeping autism insurance reform, stop for a moment and put yourself in the shoes of a parent of a child with, say, Down Syndrome. How would you feel if your son or daughter’s badly needed speech services were not covered, but your neighbor’s kid with, say, mild high-functioning autism, had broad coverage for his therapies? Can you see the inequity?

While I understand your frustration, I feel it is somewhat unwarranted. In every thing that I’ve read about this issue, I’ve never seen anything that says, or even alludes to, the fact that other children with disabilities should be neglected for those with autism. Autism Speaks is just that – a group which was developed to focus on issues and legislation related to autism. There are all different groups that focus on all different things. There probably are groups that deal with the other issues you mentioned, just as there are organizations that deal with cancer, AIDS, heart disease, etc. If they don’t exist, have you attempted to start your own?

My 18 year old son is autistic . He is covered under my health insurance as part of my family. he is currently at a residential school undergoing mostly “life training”.
Is he still covered under the family plan ? he is not in a real school anymore and is over 18